The Leukemia & Lymphoma Society Community: Message List

Re: 2012 ASH abstracts now available

communityreply@lls.org — Thu, 22 Nov 2012 00:51:50 GMT

Thank you, Greg. Your hard work is greatly appreciated!

Re: Working towards a cure: Follicular and indolent lymphoma

communityreply@lls.org — Wed, 18 Apr 2012 17:14:39 GMT

Greg,

Wow! Congratulations! I am extremely happy for you. What a milestone.

Thank you for being such an inspiration not only through your wonderful work in keeping us all informed, but also through the example you provide by being cured. You're living the dream.

Enjoy, brother!

Catman

Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....

communityreply@lls.org — Sat, 11 Jun 2011 00:50:03 GMT

Heyt NewJez,

As miraculous as Ritixin is, I think they are still trying to figure out how best to use it. My understanding is that the use of Rituxin by itself as a front line treatment and/or a maintenance treatment is becoming common practice. That's just based on what I have seen and read. Always best to check with multiple sources. My next R treatment is Monday. I've gotta have it every 3,000 miles. ; )

Good luck with your treatments.

Catman

Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....

communityreply@lls.org — Thu, 09 Jun 2011 00:00:42 GMT

Way to go, Jo! Well done. One treatment at a time. And don't forget to treat yourself to some rest and relaxation, as well as letting those around you pamper you a bit. You deserve it!

Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....

communityreply@lls.org — Tue, 07 Jun 2011 14:08:12 GMT

Go get 'em today, Jo!!!! You're in my thoughts and prayers.

Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....

communityreply@lls.org — Thu, 02 Jun 2011 16:31:23 GMT

Jo,

After I was diagnosed last spring, I started eating a very healthy diet and excercising every day. As a result I've lost 35 lbs and have never been in better shape, including the 4 years I played college football! In fact, I'm doing my first sprint triathlon of the season on Saturday. Rituxin hasn't impacted my excercise at all and the excercise has been HUGE for my mental well-being.

When I was diagnosed a wise man on this list told me that it was my opportunity to show my children how to face adversity in life, because although we want to protect our kids, they too will have their own challenges. Have a great time with your daughter! Laugh, cry, share, connect and celebrate. THAT is what life is about. fNHL just magnifies and concentrates the truth.

I'll be thinking of you on Tuesday.

Catman

Re: Final diagnosis - fNHL Grade 1, Stage IV-Rituxin (Rituximab) starts next Tuesday.....

communityreply@lls.org — Thu, 02 Jun 2011 01:05:17 GMT

Greetings JPrice,

As you know everyone's body reacts differently to treatments, but I thought I would share my experience with you.

I was dx with fNHL (Stage IV, grade 2) in May of 2010. The lymphoma spread to my intestine, so I had a section of it removed in October of last year. In November, I had 1 Rituxin treatment per week for 4 weeks. I had a PET/CT scan in late January, two months after my treatments. The result was that I was NEDD (no evidence of disease detected). I am now getting 1maintenance Rituxin treatment every other month.

The first Rituxin treatment can be a little rough. It is very common to have an allergic reaction, which is why they give you anti-histimines first. The first infusion can take a long time. Mine took about 8 hours because I had several reactions during the drip which meant they had to stop the drip, give me more anti-histamine and then slowly start the drip again. Bring a good book, laptop, iPod, etc.....After the first treatment, my reactions have pretty much all stopped. Once they start the drip, it now takes 1 1/2 - 2 hours from start to finish. I call it the speed drip method.

After the treatments I get wiped out. I walk back down to the car and my wife drives me home, we live about 2 1/2 hours from the hosptial I'm treated at. I sleep pretty much the whole way and then rest after I get home. The next day I feel fine. In fact, I always get up and go running........you know.......just to show the cancer who's boss . However, although I feel fine physically, I do find I'm a bit hazy mentally the next day. I honestly don't know if it just because I am tired from drving into Boston, having a treatment, and driving home or if the Rituxin makes me that way. Regardless, I always work the next day. I just plan a lighter day for myself.

In short, Rituxin has been very good to me. It has been very effective with virtually no side effects. If I have to go in and get my "oil changed" every other month with a Rituxin maintenance treatment, that is O.K. by me.

Hang in there. Mark my words. You've got this! Go get 'em.

Catman

Re: Working towards a cure: Follicular and indolent lymphoma

communityreply@lls.org — Mon, 09 May 2011 17:17:06 GMT

Greg,

Thank you for all of your efforts to collect and centralize this information. Thank you for giving me and my family hope as we wrap our minds around all of this.

Stay Strong,

Catman

Re: How long of a break did you get from Ritixuan?

communityreply@lls.org — Tue, 04 Jan 2011 01:44:21 GMT

Greetings Joan,

Thank you very much for your response. It is incredibly helpful to hear the experiences of others. My doctor also suggested I start out on Rituxan. I hope your next treatment takes your symptoms away. Again, thank you for taking the time to respond.

Hang in there,

Catman

Re: 6 Month Scan Tomorrow

communityreply@lls.org — Mon, 03 Jan 2011 19:53:38 GMT

Yahooooooooooo! Right on! I've been thinking about you today. I'm really happy for you. Now go celebrate!